I have no idea how consistent I’ll be, just so you all know, but I am back to blogging here!

I’m off the haldol (It caused some scary shit that is mostly cleared up now and wasn’t all in the paperwork they give you, I’ll go into more detail when I can get to my journal), and on Abilify.
Not sure it’s doing anything for me yet, what I’m feeling may just be the result of going off the haldol.

Side effects from the abilify have included nausea/vomiting, sleep problems (which are clearing up now) and restlessness.

If it works for my bipolar I can deal with it!

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On the lupus front – not so good. I’ve got to get a rheumatologist again. Nothing new, just lots of pain from the weather, and a need for more aggressive treatment so it doesn’t get worse. In the same boat with fibro.

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Endo – my ovary is waking back up from it’s 2 to 3 month nap due to the haldol (I didn’t ovulate while on it) and is making me hurt pretty badly.

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Grief – here’s the big one. I’ve acheived peace most days. I’m still sad, I still miss her, I always will, but there is a calmness about it all..

An update from this post…. It would seem to be food poisoning (and not heparin reactions!) from some cheese that was out for a bit, we thought it hadn’t been out too long, plus the kitchen was cool, so we weren’t too worried, but apparently it was out just long enough to go bad. I don’t know for sure that’s the cause of the dizziness, but since it showed up at about the point where food poisoning would (within 18 hours, and less than that, just not sure how many, it took for any signs beyond being extremely tired to show up) and since Johnny is also dealing with stomach issues, there is reasonable suspicion that that is what is happening. He’s not having the dizziness with all of it, but I’m having more GI symptoms than he is also, my gut is not as strong as his any day, but pregnant I do worse apparently.

Ok, Before I say anything else I want to make it clear that I never expected pregnancy to be the easiest thing in the world or that I expected to be emotion free – I’m really emotional even without all the hormones in a pregnancy, so of course I’m a mess as a pregnant woman lol. And (as the nurse at WIC said yesterday) with all the miscarriages it definitely makes sense that I’m crying a lot…. any emotion change brings out my tears lol. Happy tears, sad tears, frustrated tears, angry tears, the list goes on! 😛

I’ve spent all day dizzy today. It hasn’t been severe dizziness (usually when I get dizzy spells I’ve got to lay down or I feel like I’ll fall or pass out), but it’s been noticeable that I’m not feeling right! The dizziness wasn’t really there until my most recent Heparin shot (right after it I started feeling dizzy, not like I had to sit down, but just a little bit not right in the dizzy way). I’ve been having dizziness with each heparin shot, today is the first time it’s stuck around so long. Also it’s a different dizziness than I’ve had with the pregnancy, and in the past with hormone shifts. Usually I feel like I have to sit down right then or I’ll pass out when I get dizzy. With this it has been extremely mild and constant, I don’t feel like I”m going to fall over or anything, but there is a constant light dizziness. Midmorning I called my doctors office to return a call from yesterday (about labs) and mentioned I was also concerned about a possible side effect to the heparin (dizziness) and wanted it noted in my record, that it wasn’t a big deal, but I just wanted it in there. Well the secratary freaked out on me and had me talk to the first available nurse, so I did, and I explained I just wanted it in my record, I wasn’t super worried, but didn’t want something major to happen later and not have mentioned this. The nurse talked to a doctor who said “It’s not a side effect, it’s just pregnancy, don’t worry about it.”

I will have to update more later (I’ve got auras happening again, going to go lay down… probable migraine coming on) but basically I was told to just go get checked out at ER to make sure it’s nothing more major and will be doing that in the morning as I have no way to do so tonight. And again – I’m not worried at this point (beyond the normal this isn’t good type feeling, but not major worry about right now) but I will still go get checked out tomorrow like they want me to.

Edit: There is an update here … it seems to be food poisoning and not heparin reaction stuff, though I will be keeping an eye out once I’m past the food poisoning to be sure that it doesn’t continue.

I’m officially on heparin as of a couple of hours ago. The prescription is for two times a day every day for the rest of the pregnancy (and possibly a few weeks after from what I’ve read). Johnny gave me my first shot after lunch. He will be doing the next couple of shots, at which point I’ll take over to make sure I do them right (I’m cringing as I type that), as I’m going on a trip to get Gamer and Duckling for the summer, and although I will be with people who can give me the shots for most of the trip, there will be times when I will need to do them myself. Once I am home again he’ll be taking back over for me as I’m REALLY not a fan of needles and just watching him give me the shot earlier made me feel gross, plus it’s not a pleasant feeling medication, so I do not want to be doing it myself more than I have to.
I don’t think I’ve mentioned this, but my progesterone (prometrium) supplement is $120 for a 30 day supply (at the dose I’m on) without insurance, and our insurance is great for generics, but there isn’t a generic for it, so they are only covering a fraction of the cost, and we were still paying $96/month for it. That was a big stress for us as it had been unexpected at that cost. I applied for a second insurance for pregnancy a couple of weeks ago as I knew our insurance wasn’t going to cover anything (HUGE deductible + really bad insurance) and am on it temporarily (until 7/31), which will hopefully become until the end pregnancy… I have an app in to get it approved to cover the whole pregnancy. I took my paper with my information in to the pharmacy today when I went to pick up my prescriptions (heparin, the needles and syringes for it – itty bitty things, and prometrium) and guess what?!? Although my heparin and needles aren’t covered by the insurance my prometrium was COMPLETELY covered! I can’t tell you how much of a relief that was! 🙂 And my heparin is covered by the other insurance, so it was cheap.
Now for the trip part of all of this. I will be making a trip next week to see my family and friends and to pick up the kids (the main point of the trip is to pick up Gamer and Duckling from their other home and bring them to ours, an added bonus is that they are two hours from my parents and some family and friends, and within 30 minutes or so without bad traffic of another group of my family, so I get to visit with a lot of my family while I’m there!!!). I haven’t talked much about my trip as the whole thing has me really stressed even without the pregnancy, but there it is… I’ll be visiting friends and family and picking the kids up in about a week, then home before Father’s Day.

I had my first OB appt of the pregnancy today. Johnny and I left just before 1 and didn’t make it home until after 4, so I’m worn out and hope this all makes sense.

She (Dr. P – my OB) walked in and grinned at us over the pregnancy! Then she said something like “See, I told you to get pregnant and it worked!” … Johnny and I both really like her. She sets us at ease right off, she always checks to see if we have questions or comments, she wants our input, and so on.

The plan is:
I will see an OB (not just a NP) every month. There will be ultrasounds performed at every appointment.
Sometime in July (once I’ve had another regular OB appt with u/s) I will see a perinatologist …. I will also see this doctor at 20 weeks (or so) and 28 weeks (or so)… the reason it’s not going to be exact is because we only have a perinatologist closer to us than 4 hours away two days a month. There is one who comes up from Albuquerque twice a month, if we didn’t have him we’d be driving at least 4 hours (each way) away to see one… this way we only drive about an hour each way. So we’ll be seeing him as close to 20 weeks as possible (though it will be at or after because of what we need to image at that appt) and as close to 28 weeks as possible, as well as sometime in July. My OB will also be working with him on my case due to the lupus and the fact I’ll be going onto heparin shots next week some time. The reason we have to be past 20 weeks before I see him is that we need to do the 20 week u/s with him due to the concerns about issues my lupus can cause in a fetus, including heart blockages. So that ultrasound is to be done by him… also that’s one of the major ultrasound points for growth checking and so on I guess, so my OB wants him to do it… and I assume he’ll want to do it as well. In between appointments with the perinatologist I’ll be seeing an OB in the practice I’m working with. Due to doctors being on call and having different days on and off due to that (and my ob also being a laparascopic surgeon) it will depend on the day and the week for who I see, but it will always be one of the OBs.
As I mentioned I will be on heparin. I need to get some blood work done (which we all forgot to have her order for me so I could get it done today) for baseline numbers and so my OB can communicate with the perinatologist so they can decide which levels of heparin I need to be on (prophylactic/preventative or therapeutic) depending on how the blood work comes back. I’ll also have tests done a couple days into heparin treatment to see how the levels are looking at that point. I will be (probably) taken off of the aspirin at this point, though Dr. P is talking with my rheumy to see what she recommends on the drug combo, especially since the rheumy is the one who originally had me on aspirin.

We also will definitely have to (somehow) make it to the hospital my OB works out of no matter the weather or amount of snow when I go into labor, if they’ll even let me try to deliver naturally, I’ll have to talk to both doctors about trying that. This could be interesting since I’m due in mid-January which is some of the worst snow (we’ve had to make it up there for appointments before for both of us at that time of year and nearly had to turn around because it was a total white out)…. However there is no way that there is a delivery happening at home or our local hospital at this point due to the risks involved with this pregnancy.

So about two weeks ago my period started through my birth control, not surprising to me (other than not expecting it right then)…. birth control never works continuously for me for long it would seem. I called my general doc and explained what was going on with the migraines and the period and the birth control, and that I thought it would be good to change birth controls since I can’t really go off of them at this point with my other meds. He and I discussed for awhile and decided to try the Nuva Ring. I missed a call from him later that day as I was in bed, apparently he called to tell me he was not comfortable with prescribing a birth control of any sort with the migraines in the mix, especially since he doesn’t know that much about lupus or endometriosis. I again missed a call on Monday, so I just talked to them Wednesday when we were there (at the clinic) for E. There is an OB/Gyn he and E’s doc have been wanting me to see since the second miscarriage, but I put it off since we weren’t going to be trying for at least a few months, and there just wasn’t money at that point. This changes things. They really want me to go see that gyn. Part of my problem is that I can’t find a website, or any info beyond an address and phone number and patient reviews (no comments, just star ratings) for the guy. With my h ealth issues, and especially since this doc would be treating my endo, infertility and other issues of the gynecological variety, as well as having to coordinate with two other doctors, this doesn’t make me comfortable. When I was looking into possibly having surgery almost two years ago I researched doctors in the area, and found a ob/gyn group that has a couple doctors who specialize in laparoscopic surgeries, infertility/family planning/fertility issues, and high risk pregnancies. I feel this would be a better group for me to go to. I would like to follow my general doctor’s recommendations, but especially with his not knowing much about my illnesses, and how many docs I’ve gone through with the endo, I feel much more comfortable knowing ahead of time that the doctor is at least familiar with everything, if not dealing with it frequently (and since this office has two different doctors who specialize in minimally invasive and laparoscopic surgeries I’m going to guess they are the go to docs in the area, though obviously we want to meet them before I say “this is the doctor” for treating any of this). I’m not against meeting with the Gyn my doctor wants to send me to, but I want to see if there is a reason for that one in specific. If not, I want to go see one of the doctors at this other group.
I’m also hoping to go off a couple of my meds soon, as one isn’t doing much of anything and is a higher risk for pregnancy, and the other is birth control, which could be related to my migraines and I just prefer not to add that crap into my system any longer than I have to. But like I’ve said before, I want to be on birth control whenever I’m on that other med. For reasons I won’t go into (mostly on my end…) abstinence isn’t really much of an option for us. Well, at least not if I’m off the birth control pills LOL! And do to my “girly bits” issues (vulvodynia and/or vulvar vestibulitis as well as interstitial cystitis, and both of us being latex sensitive) most other forms of birth control are out. I’m just way too sensitive, and even E gets discomfort from most other types of birth control. I have to use special lubes for goodness sake…. so yah. Pretty much if I’m off birth control there isn’t much in the way of stopping a pregnancy (at least not short term or nonpermanent ones). That’s probably part of why my PCP wants me to go to an OB/GYN… because I’m pretty frakking complicated!!!!!!!
So this morning I called up to the clinic that handles our primary care and left a message for my PCP about possibly going to one of the OBs at that group instead of the one he and E’s doc recommended. I’m hoping to hear back tomorrow, since that’s when the nurse said she’d be able to get back to me… at the earliest. And I’m still waiting to hear back from my rheumatologist’s office on a couple of things… but I won’t likely hear back from them until next week now, because of the fact that my rheum only is there two days a week, and those days changed to Tuesday and Wednesday. GRR! So I ordered a new pack of birth control and pick it up later today as I’m on the last couple in my current pack. And hope that I can get at least partway through it by the time my doctor pulls me off the meds, though at least prescriptions are cheap with E’s insurance (the only thing that is).
And that’s my latest news, I am adding another doctor to my list. Hopefully the last one for now (and for at least a few years?)….